Endometriosis Treatment Is Failing Patients. Why Aren’t More People Talking About It?

In 2016, Les Henderson was diagnosed with thoracic endometriosis after their lung collapsed. In this rare form of endo, endometrial tissue grows in patches on the lungs, leading to symptoms including chest pain, shortness of breath, and cough.

To manage their endometriosis, Henderson was prescribed Lupron Depot, a hormone therapy that helps suppress estrogen. The sex hormone is thought to fuel the growth of endometrial tissue, so keeping levels low often helps treat symptoms and prevent the condition from progressing. (According to the Journal of the Society of Laparoscopic & Robotic Surgeons, medication is considered to be a standard and effective first-line treatment for thoracic endo.)

Frustratingly, the drug didn’t help Henderson’s endo symptoms. And Henderson experienced side effects, including extreme moodiness, severe hot flashes, and bouts of uncontrollable crying.

Having already been living with endo symptoms for years, Henderson asked for a hysterectomy, hoping that it would significantly decrease their endo symptoms and enable them to get off Lupron Depot. (A hysterectomy, the surgical removal of the uterus, is considered a “last resort” option for the treatment of endo, according to the American College of Obstetricians and Gynecologists.)

Their doctor flat-out refused, citing their age — they were 31 years old — as the reason, according to Henderson. Instead, the doctor just insisted Henderson continue Lupron or birth control.

“It was hell,” Henderson tells PS. “[The side effects] destroyed some of my relationships.” They remember thinking, “I can’t keep going on like this. I can’t keep taking these pills.”

Henderson’s experience is extreme, but not entirely unique. While medications can provide relief from endo pain, they also sometimes come with disruptive side effects. And patients who experience these side effects often describe feeling unheard and unsupported by the medical professionals who are supposed to be helping them.

How Doctors Fall Short For Endo Patients

Endometriosis occurs when tissue similar to (but not the same as) the lining of the uterus grows elsewhere in the body. Considered one of the most painful health conditions, it can cause gastrointestinal issues, organ dysfunction, infertility, chronic pain, and severe fatigue, among other symptoms.

Endometriosis can be treated with medication, surgery, or both, typically supplemented with lifestyle changes. Excision, which involves surgically cutting out endometriosis, is considered the “gold standard” treatment. However, due to the invasiveness of the procedure, most patients are offered medication first, especially when pain is their primary symptom, notes the American College of Obstetricians and Gynecologists. Many are initially placed on birth control or other hormonal therapies, says Katie Boyce, a board-certified patient advocate specializing in endometriosis care.

Medications including oral contraceptive pills, gonadotropin-releasing hormone (GnRH) medicines like Orilissa, oral contraceptives, progesterone and progestin medications like some types of IUDs, and Danazol, can effectively treat endo pain by suppressing hormone levels, says Louise P. King, MD, a gynecological surgeon at Brigham and Women’s Hospital and assistant professor at Harvard Medical School.

But these hormone therapies come with possible side effects, including severe mood swings, reduced libido, bone density loss, depression, pain, insomnia, night sweats, fatigue, and more.

Doctors, however, often don’t adequately caution patients about the side effects they may encounter when taking medications, says Heather Guidone, a board-certified patient advocate and the program director of the Center For Endometriosis Care. And they may ignore or brush off patients who are complaining of side effects, a phenomenon sometimes called medical gaslighting.

For instance, Lindsay Hafer, who was diagnosed with endometriosis in 2011, feels that her doctor downplayed possible side effects of hormone therapies when she was first diagnosed. So she began the course he recommended. But the medications significantly impacted her quality of life: “It was awful. I couldn’t go in public because the hot flashes were so severe. I was tired all the time. I wasn’t myself, just extremely moody. It wasn’t good.”

Doctors may also present medication as the only option for endo treatment and fail to offer counseling on how to optimize their diet and lifestyle to help with pain management, Dr. King says. “When medications don’t work well for patients, it’s typically because they’ve just been thrown medications and not given additional multidisciplinary care,” she says.

Finally, patient advocates and patients say doctors who aren’t endometriosis specialists may be too slow to offer people with endo surgical options for diagnosis and treatment, because the conventional wisdom is that medication is the best treatment.

Katie, a 33-year-old woman based in Ottawa who asked not to be identified by her last name, had a doctor threaten to drop her as a patient unless she agreed to take some form of hormonal therapy. Worried about her ability to find another specialist nearby, she did — but the medication didn’t control her pain, and she continued to experience frustrating symptoms, including breakthrough bleeding.

When Katie told her general practitioner, a different doctor, about these issues and asked about surgery, she slow-walked Katie. It felt like a “roadblock,” she tells PS. “I had to fight her on that.” When she was finally referred to a gynecologist about three months later, he immediately recommended surgery.

Inadequate treatment can lead to “prescribing cascades,” which occur when other medications are prescribed to offset side effects of a drug treating the health condition. According to Boyce, they can lead to a vicious cycle of further symptoms and misdiagnoses.

Cari Reck, who lives in Minnesota and has been an endometriosis patient for more than 35 years, was misdiagnosed with both Addison’s disease and type 2 diabetes based on symptoms caused by her endo-related medications. These prescriptions include anti-nausea pills, muscle relaxants, arthritis medication, sleeping pills, antidepressants, pain relievers, and anticonvulsants — all prescribed off-label to counter side effects from hormonal therapies.

Why the Endometriosis Treatment Gap Exists

Dr. King believes healthcare providers fail to adequately brief patients on the side effects of endo meds or fail to act when a patient complains of detrimental symptoms because of issues around access and education.

Since the curriculum required by the Accreditation Council For Graduate Medical Education, which sets the education curriculum for ob-gyns, doesn’t cover endometriosis in depth, ob-gyn residents leave residency without knowledge about how to properly treat endo. General providers like pediatricians and school nurses, who often see patients when symptoms begin, have even less training about endo.

Guidone and Boyce agree that in addition to a lack of education, the pharmaceutical industry’s influence may also play a role in why doctors are quick to prescribe and favor medications even when endo patients complain of medication-related side effects. “Some of the loudest voices in endometriosis information are people with strong pharmaceutical ties,” Guidone says.

Additionally, as is often the case in medical settings, research shows that endometriosis patients often contend with treatment disparities caused by racism, homophobia, transphobia, fatphobia, and classism, Guidone adds. A study in the journal BJOG, for example, found that Black and Latine women were less likely to be diagnosed with endo than white women.

Henderson, a Black, gender-nonconforming, masculine-appearing lesbian, describes feeling dismissed by doctors who incorrectly associate endometriosis with white, thin, traditionally feminine women.

In one instance, Henderson says their doctor prescribed what would’ve been a fatal dose of a self-injectable drug; luckily, their pharmacist caught the mistake in time. Although it was probably simple carelessness, Henderson has experienced enough discrimination at the hands of medical professionals to suspect that bias — unconscious or not — played a role.

What Endo Patients Can Do

When it comes to endometriosis, self-advocacy is essential. At appointments, take notes and ask follow-up questions until you feel confident you understand your treatment plan. When you’re prescribed a meditation, talk to your pharmacist as well as your prescribing doctor about side effects and drug interactions — both to catch possible mistakes and to get a complete picture of the medication from an additional professional.

If possible, both Reck and Henderson recommend bringing a support person — like a friend, family member, or patient advocate — to appointments to help keep track of information and advocate for you.

Trust yourself, and if you feel your voice isn’t being heard, consider seeking a second opinion. If possible, try to see an endometriosis specialist, as many general practitioners are not specifically trained in endometriosis. Since endo is complex and not fully understood, finding medical providers with proper training and experience is key.

Reck also encourages patients to find community through support groups, which can provide affirmation and access to better information, including recommendations for doctors. Many support groups are accessible online, and some doctors can refer patients to local groups and other resources.

Still, Guidone says the onus shouldn’t be on patients. “I wish [doctors] would do their homework more. But above all, I wish they’d believe their patients. You have to treat the human being, not the lesion,” she says. “Let them lead the discussion, listen to them, then come up with a solution together. Be it medication, surgery, or a multidisciplinary combination, whatever works for the patient is what they should be given.”

The information in this article is not medical advice. You should always consult your doctor regarding matters pertaining to your health and before starting any course of medical treatment.

Marisa Wright is a student at Harvard Law School and a graduate of the University of Michigan. Her work has appeared in Ms. Magazine, Harvard Review, Liber, Balls & Strikes, and more.